How yoga helped during the process to diagnose MS
In a previous post I described the series of strange symptoms that continued to increase over a few months in 2015. In this post I talk about the medical aspects of how multiple sclerosis was diagnosed, and how yoga helped every step of the way.
Clinical tests and humour
When my symptoms became unmanageable in September 2015 I was referred to a neurologist. At this stage no one had even mentioned MS. While I sat in the waiting room I saw posters on the wall showing details about Parkinson's Disease and immediately thought of Michael J Fox. Could I have Parkinson's?
I met the neurologist on Thursday 3 September and she reviewed my previous brain scan, bloods and other reports sent through by my GP. She conducted clinical tests in her office – all pain-free and actually kind of fun – including checking blood pressure, listening to my heart, checking my pupils and my hearing. Next, she focused on my limbs and muscles to test tone, strength and reflexes. I had to push my feet, legs, hands and arms against her hands as she applied pressure. When she used sharp pin pricks and a cold tuning fork to test sensory impairment, I was fascinated and curious.
We walked out into the long hallway and she asked me to walk away from her towards the far end of the corridor. She then asked me to turn around, face her and move towards her as quickly as I could. By this stage I could barely walk without feeling imbalanced. I wobbled and stumbled while I ‘jogged’ and nervously giggled. The feeling of being unable to control my body was so unusual that I had to laugh. Even though I was using humour, I knew that the mood in the air had changed.
We sat back down, and her demeanour and face said it all. We’d gone from light and friendly to serious and sombre. Given there seemed to be no lesions on my brain from my first MRI back in June, the tests she’d just performed – which to me felt so innocuous as to be irrelevant – raised her concerns that I might have a spinal lesion. More tests needed to be done, but she mentioned potential options like transverse myelitis or multiple sclerosis and set about finding an MS specialist.
I asked why she needed to refer me on. Her speciality was neurodegenerative diseases like Parkinson’s and Alzheimers, which involve the progressive death of neurons. MS on the other hand is an autoimmune disease that leads to demyelination, where the message-passing ability of neurons is damaged by myelin destruction.
Pardon? It was all so hard to take in.
I’m glad she was my first contact point within the dark realms of this alternate universe of doctors and tests and hospitals. She showed compassion, explained things simply, and offered hope. She said if it did turn out to be MS, medical advances have improved outcomes. She explained that unfortunately, while most people diagnosed with MS won’t die FROM it, they will die WITH it. Because right now there is no cure.
Oh.
She organised an MRI for my brain, neck and back, along with a lumbar puncture. With palpable sincerity and care, she wished me the best of luck.
MRIs and meditation
This disease is a tricky one to diagnose because there’s no single, all-encompassing MS test. People experience a wide range of symptoms, so doctors go through a process of ‘diagnosis of exclusion’ to rule out other diseases or health issues.
Magnetic resonance imaging (MRI) is the diagnostic tool that provides the most sensitive, non-invasive way to capture images of the brain or spinal cord. Doctors use MRIs to find evidence of nerve damage in the central nervous system (CNS) – specifically, lesions or areas of damage or scarring.
The following Monday, four days after seeing that first neurologist, I went to the hospital. After stripping down and putting on a flimsy gown, I lay flat on my back on a bed that rolled back inside a large tube. These machines act like a big magnet that uses electromagnetic fields and radio waves to scan your body to create images. It’s a cramped space so I was glad not to experience claustrophobia.
The scan took about 90 minutes. While it was painless, it was loud! The internal part of the magnet made repetitive tapping and thumping noises which were unnerving, and the earplugs and headphones did little to drawn out the noise, which was sometimes like standing next to a jet plane on the tarmac. I found myself zoning into mindfulness meditation while I listened to the rhythmic thumps and beeping noises. I tried to surrender to the jerky and then smooth flow of the platform moving forwards and backwards.
It was a challenge to lie completely still. My back started to feel uncomfortable. My nose became itchy. At one point I sneezed! Thankfully it was while the machine was repositioning itself, so the image wasn’t impacted. Dealing with the remnants of that sneeze meant I had to deal with a tiny, watery drip that slowly ran from my nostril, down my lip and into my mouth. It took my mindfulness meditation to a whole new level.
Lumbar punctures and holding yoga poses
The next day was my lumbar puncture, or spinal tap. This test was to find out if there were any oligoclonal bands in my spinal fluid.
Stay with me here – this is where it gets a bit technical, but also points to the heart of what goes on with multiple sclerosis.
An oligoclonal band (OCB) is an immunoglobulin G (IgG) protein, which is a type of antibody. It’s a Y-shaped protein produced by the immune system to fight off infections.
Antibodies are normally produced by B-cells in organs like the spleen and lymph nodes. They then travel in the bloodstream and go about their business of fighting infections.
When OCBs are synthesised within the central nervous system, it’s not good. It indicates that B-cell clones are present in the brain and spinal cord to produce these antibodies. That’s a strong sign of an ongoing inflammatory process or immune response happening in the central nervous system. More than 95% of all patients with multiple sclerosis have permanently observable oligoclonal bands.
To find out if I had these OCBs, I prepared for the next procedure - a spinal tap. Again I donned an attractive hospital gown with my backside hanging out. I lay down on my front on an exam table. My lower back was sterilised then numbed with a local anesthetic. A hollow needle was inserted in my lower back (between the L4/5 vertebrae) to draw out cerebrospinal fluid (CSF). The needle stayed in my back for a few minutes while spinal fluid slowly dripped out to collect about one tablespoon of fluid. When it was all done, they applied a fancy band-aid.
During the 30 minute procedure I focused on my breathing and tried to practice mindfulness. When the needle went into my lower back I was told to remain absolutely still. I found a place in my mind where I could pretend I was holding a gentle, static, prone yoga pose. I found a way to focus on my breath and my body so I could stay deeply still and not move. Slow and steady breath, in and out, in and out. Afterwards I lay flat on my back for around two more hours.
It certainly wasn’t a pleasant procedure. What made it worse was the terrible headache that became more severe over the next few days. This ‘post-dural puncture headache’, or spinal headache, indicated that spinal fluid was leaking out of the puncture site because the hole hadn’t healed over properly. Ugh! So a few days later I had a follow-up procedure called a blood patch. Again, I had to lie down on my stomach, but this time blood was drawn from my hand and injected back into the needle site in my lower back. The blood formed a clot and sealed the hole, patching it back up. It was a painful complication but I was glad that it was resolved with further medical intervention to assist my own body in healing itself.
Now that all of the tests had been completed, it was time for the results.